I wish I'd said it first:

"The world is a stage but the play is badly cast"
Oscar Wilde

"In the end, it's not going to matter how many breaths you took, but how many moments took your breath away."
shing xiong

"Life is hard; it's harder if you're stupid."
John Wayne

"Life is a great, big canvas and you should throw all the paint you can on it."
Danny Kaye

Friday, November 25, 2011

Type 1 Diabetes: Through a Mothers Eyes


The denial.

I am so proud of my children. I had them when I was in my forties and like most mothers, they are extremely precious to me. They both are wonderful, shining stars. This means I am one of the growing numbers of women who have chosen to have children later in life. But being an older Mom also means that I am supposed to be less naive and have more life experience. So why wasn’t I using all that experience to act on my instinct that told me that something wasn’t right? Why was I ignoring the inner voice that was telling me there was something terribly wrong? How could I allow myself the luxury of languishing in denial when it came to something so important, life threatening and urgent? 

Just weeks before being diagnosed

About two thirds of the way through the 4th grade school year, in March, I began noticing little things, things I brushed aside. I told myself I was just being paranoid. I noticed that my nine year old daughter Jacqui, was drinking an extraordinary amount of water and was constantly getting cups of crushed ice. She was getting up in the night to urinate several times. At first I thought she was drinking so much and using the bathroom more because she was such an active child and isn’t it normal to drink more when you play outside in the hot Southern California sun? And isn’t it normal to have to use the bathroom more if you drink more?  Somewhere, in the back of my mind, I was thinking that these were the classic signs of diabetes but I quickly rejected this since Jacqui had always been such a healthy, happy kid. I was trying to make myself believe that my child couldn’t become the victim of a lifelong and deadly disease. But I watched her closer and kept those menacing thoughts to myself. 

It was staring me in the face.

I watched Jacqui, carefully looking for obvious signs. Some days she was so normal, not at all what most people think a diabetic should be. She played with her friends and brother. She went to the pool and rode her bike and skateboard. She helped around the house and made messes with her art and craft supplies. So when she started dropping weight, I thought it was due to her getting taller and exercising so much, also it seemed that she was eating less. I thought her decreased appetite was part of a normal, developmental cycle. She complained daily about aches in her legs. I gave her children’s motrin and told her that she had growing pains, she had grown two or three inches over the past several months and so this was not much of a leap. In retrospect I wonder, what was wrong with me? How could I not have done anything when the signs were all so obvious?  On the other hand and in my defense, the symptoms were intermittent and not occurring all at once. She would go for a week without the unquenchable thirst. The weight loss, at first, was slow and the “growing pains” just seemed to be normal for a kid growing so fast that her bones ached. But put them together and these are all symptoms of type 1 diabetes. 

More signs.

School was almost out for the summer and both of my children were anticipating being freed from the restrictions of a rigid school schedule. They anticipated spending hot days at the pool and staying up late in the middle of the week. They looked forward to sleepovers with friends and days at the beach. We had fun talking about what we were going to do over their vacation.
With just three weeks left before school let out, we began planning our family foray to the county fair which traditionally ushers in our summer. We talked about driving to California’s Central valley to visit their grandparents. 
Everything hummed along without a hitch except for a nagging and dark suspicion that something wasn’t right with my little girl. She had a single incident at school, just an accident I thought. She wet her pants when her teacher had not allowed her to use the restroom. She could not hold her urine. But this was only one isolated event, hardly anything to get all worked up over. Again I ignored the voice in my head whispering a little louder now: “diabetes.” Then the last week of school finally arrived. My son was finishing fifth grade and in September he would be going to middle school, he has Asperger’s Syndrome and is on a specialized study plan where he is mostly home schooled and so most of my energy had been focused on him making it through his last year of elementary school. Jacqui would start fifth grade in the fall. 

Coming to my senses.

That last week of school seemed like it would never come.  Jacqui came home void of energy. She walked in from school and flopped onto the couch and on two occasions fell into a deep sleep. Again, I really didn’t think much of this since I remembered my school days as being long and exhausting. In fact, I often wondered to myself how kids could stand being in school for so long each day... I mused that it had to be hard. Then the first day of freedom finally arrived. The first day of summer vacation. Midway through that first day Jacqui fell into a deep sleep and slept for over three hours. But it was overcast and gloomy and we were housebound that day so I thought she had fallen asleep due to boredom. But the next day she did it again, she slept a deep kind of sleep that lasted for several hours. She had lost a lot of weight by now, her clothes were hanging on her and we scrambled to find pants and shirts in her dresser that were two to three sizes smaller. I called the pediatrician and made an appointment for a few days later, I didn’t tell the lady answering the phone anything except I wanted to get her blood sugar checked - but then, after hanging up, I called back and asked if they could see her the next morning and I confessed my suspicions - I actually spoke the word diabetes out loud for the first time, they told me to bring her in. For the first time in three months I fell asleep thinking it was possible that all my fears had added up and I may find out that my daughter was diabetic. I hoped that I was making a mountain out of a mole hill.  I was hoping it was something that could be cured with some vitamins or a change in diet. I was hoping that I was very, very wrong.
I watched her getting thinner & thinner


Reality.

Normally, the drive to the pediatricians office is not a long trip but I took a more circuitous route so I could prepare Jacqui for what may be some pretty harsh news. The nurses aid ushered us right into an exam room and after taking a single drop of blood and obtaining a urine sample the results were instantaneous and undeniable. Nothing would ever be the same, the dreaded cat was out of the bag. I was given a piece of paper with Jacqui’s blood glucose level and ketones hurriedly written on it and an order to go to the emergency room straight away. From that moment on, for the next three days, I was on autopilot. Day one was long and mostly spent in the emergency room intake area behind a curtain, hidden away in the corner where the ER staff talked Jacqui through getting an I.V. line set up with a constant drip of vital fluids that her little body had been craving and for the first time in a couple of months she was getting the insulin that her pancreas had all but quit making. The following hours and days were spent in Rady Children’s hospital with my husband, son and me crammed into a tiny room, around a bed where my baby girl was hooked up to I.V.’s and monitors. The staff came and went constantly through the small room and a parade of interns and residents filed through introducing themselves and asking the boilerplate questions. They filled our heads with information and advice but nothing they said or did could possibly prepare us for the reality of caring for a diabetic child. In fact, the hospital staff went far out of their way to sugar coat our upcoming plunge into our new roles. They didn’t want to scare us. Too late. I had been diving into the copious amounts of information on the internet and the outlook for children, suffering with this disease was very mixed.

We heard about how diabetics can and do live “normal” lives, becoming actors, politicians, attorneys, athletes, scientists and doctors but not once did anyone fill us in on the stark reality of what diabetics and their caregivers go through on a daily basis nor were we told about the statistics that were downright frightening.  We were not told about how the primary care giver, (me) would spend night after night sleeplessly, monitoring blood glucose levels, all the while feeling helpless when those levels plunge dangerously low and then shoot up to the other end of the spectrum. Then there are the night time calls to the on-call endocrinologists searching for magical advice.  We were trying to do everything right, everything perfect when in reality, managing blood sugar is a lot of educated guess work. We were not prepared for how dramatically a diabetic reacts to having a virus. A common cold can be life threatening for a delicate system already stressed from wildly fluctuating blood sugar levels. A cold can make diabetes unmanageable at home and can land your little kid back in the hospital where I.V.’s and experts take over where parents fall short. 

Facts.

Type 1 diabetes is an autoimmune disease that kills children. That is a fact that you will not hear when you are being educated by your child’s health care provider. In my case, it was as if they all went out of their way to tell us just how normal a diabetics life will be and that managing the disease is easy. 
Here are the facts. Cold and harsh, undeniable facts. If a diabetic wants to remain relatively healthy there is nothing that takes the place of checking blood glucose levels several times a day and making the correct adjustments. The parents and diabetic have to be constantly vigilant. One missed step can mean disaster. Not being there if the blood sugar drops to a dangerous level or rises to crazy highs can mean seizures followed by diabetic coma. Comas can lead to death or permanent nerve or brain damage. Oh and you think there is a lot of warning? Try again. Hypoglycemia (low blood sugar) can occur within minutes and a diabetic can become unconscious within twenty minutes of the first symptoms. The most common time for a diabetic to go into a coma due to low blood glucose is during sleep. So how do you know when a sleeping person is having low blood sugar? You have to test them during the night. You have to stick their little, delicate fingers with a razor sharp needle to get that precious drop of blood. You do not have the luxury of ever sleeping through the night again. Get used to it. 


Diabetes is the most common cause of kidney failure.  40 percent of people with type 1 develop severe nephropathy and kidney failure by the age of 50. Some develop kidney failure before the age of 30. Then there is heart and blood vessel damage. Diabetes makes getting cardiovascular disease far more likely. About 65 percent of diabetics die from some form of heart or blood vessel disease including stroke, narrowing of the arteries, heart attack and high blood pressure. Diabetics experience an increased risk of nerve damage, they can lose feeling in their extremities and often develop pain and tingling sensations. Let’s not forget damage to the eyes. Diabetes can damage the tiny blood vessels of the retina and if they live long enough, almost every single person diagnosed with type 1 diabetes will develop some level of retinal damage due to the disease. According to the CDC: “Diabetes is the leading cause of new cases of blindness among adults aged 20-74 years. Diabetic retinopathy causes 12,000 to 24,000 new cases of blindness each year.”  Type 1 diabetes is lifelong and until a cure is found my little girl and all other children and young adults diagnosed with the disease will have to inject themselves several times a day with insulin for the rest of their lives. 
Shortly after arriving home, Jacqui measures her insulin
The emotional toll.

The emotional and social implications are daunting due to the constant need to monitor blood sugar and for a caregiver to be there to administer insulin or carbs at a moments notice. Because of this, the likelihood of a diabetic kid going to a friends house for a sleepover is about as likely as waking up and finding flying unicorns in your garage. It gets worse too, no more carefree days spent with family, friends or anyone who is not trained to measure insulin dosages and give injections, count carbs and react properly in emergency situations. A diabetic child is really an out-patient who is dependent upon their parents for medical care 24/7. These children need to be with someone who can read the physical signals of low and high blood glucose levels and take the appropriate action. Low blood sugar is very dangerous and scary. Who wants to take responsibility for watching over a child with this kind of serious medical condition? Frazzled nerves of overspent parents who don’t get enough rest can often times create a stressful environment for the very people we are doing so much to protect. Going out to dinner and a movie while leaving the kids with a friend or a sitter becomes a dim memory.  to successfully manage this illness, it takes a 100 percent commitment from the diabetic as well as the caregivers. All of this adds up to a stressful set of circumstances, that if ignored will eventually take a very ugly twist. 

The stress of diabetes causes an emotional toll that is rarely addressed or discussed but is actually a major factor of this disease. The psychological impact of having to constantly monitor blood and diet is significant and not just for the person with diabetes but for their caregivers as well. Depression for diabetics can spiral out of control when blood sugar levels drop because low blood sugar often causes erratic behavior and self destructive impulses. If the diabetic doesn’t have seizures and end up in a diabetic coma the low blood sugar gives way to  increased and inevitable high blood glucose levels which, when left untreated, cause organ damage or total failure and the depression causes inaction.
Financial problems often arise due to the astronomical cost of all the things necessary to treat and care for a diabetic child. We have excellent insurance but even so, the added cost is something that adds to the stress of our daily battle with diabetes. Our insurance covers the lions share of expenses  but we still end up several hundred dollars, out of pocket, each month. For example, each test strip is about one dollar and we test anywhere from seven to fifteen times a day and even more if Jacqui has a cold or the flu. 

How diabetes has changed our lives.

Diabetes has changed my daughters life for ever. She will have to wake up every morning and check her blood sugar before she can have a cup of coffee. Going to school for her will be even more challenging than school already is for kids her age since she will have to test herself while at school and be able to react to the test results appropriately. No birthday cakes, cookies, candy or other sugary treats during classroom celebrations. (Something Jacqui has always enjoyed.) She is able to accurately measure her own insulin and inject herself and so, for her, this is empowering. Never leaving the house without her “survival kit” is another change because leaving the house without it is not possible. We keep apple juice, testing kit, insulin and an ice pack in an insulated bag so we can grab it and go. As I mentioned, she can not stay at friends houses overnight nor can she leave for the day to visit the zoo with her friends unless one of her parents goes along. 

It took me only a short while, after Jacqui went back to school in September to realize that it was not going to work out. The class sizes of up to 36 kids, crammed into a room with just one teacher, was hard enough for a healthy child. Every year I anticipated the never ending colds and flus that both of my kids brought home and passed to me. She was only in school for about 10 days when she came down with the first signs of a cold. It started with a sore throat and then came the fever. Her blood sugar, already crazy and unstable, went even more insane by climbing into the low 400’s. A normal blood sugar is around 120. Also with the cold she didn’t want to eat and so I was struggling with adjusting insulin doses for a kid who was unwilling or unable to get enough carbs into her body to use the tiny doses I would give her. When the blood sugar would skyrocket, I’d give her insulin which would have the chilling effect of making her blood sugar plummet into dangerous lows. Then, not surprisingly, I got the cold from her. I became so sick myself I could hardly do anything. I wanted so much to just sleep but sleeping was not an option. Jacqui’s erratic blood sugar levels terrified me and so I forced myself to stay awake so I could check her blood sugar every ninety minutes. 

Thats’s when I decided to homeschool her. I was already homeschooling my son with Aspergers. This was our first year, but I was confident that it was the only answer for him. He was starting middle school and after looking into all the options available, I realized the public school system was going to be unable to handle his emotional problems and to meet his many needs. My sons condition makes it impossible for him to be in a classroom without an adult supervising him. Briefly, Aspergers is a high functioning form of autism that primarily effects a persons ability to socially integrate with their peers.  Some are exceptionally intelligent but uniformly, they have serious issues when it comes to their social behavior. Ian, my son has a near perfect memory and likes history and is good with dates, places and names but he is unable to understand social protocol.

The only thing that made sense was to also homeschool Jacqui.

Everything has changed.

I can’t think of one thing that the diagnosis of diabetes has not effected in some way. From how my daughter exercises and plays to how she sleeps, eats and thinks about life. Her future may not include having her own children. She may experience one of the numerous and predictable side effects of this horrible and terrifying disease. But for now, she is my beautiful baby girl. My precious angel.

Seventeen Months Later
I’ve learned a lot and so has Jacqui. At the end of October, she started using an insulin pump. More education and even less sleep for me. Getting the basil (background insulin) levels worked out and the insulin to carbs ratio in order has taken the past three weeks. I’m beginning to feel comfortable with her night time numbers and have gotten used to changing the pod that is on her body and delivers the insulin, every three days   No more shots. Don’t let anybody fool you, the injections are painful and had to be administered every time she ate. Now her PDM (Personal Diabetes Monitor) calculates the correct amount of insulin to carbs. It’s fast, easy to use and the newfound freedom is making a positive difference.
Jacqui today



4 comments:

Toka said...

My cousin was diagnosed with type 1 diabetes when he was 8, it was devastating especially to his mom and we were so worried for his life. My cousin is now 19, a sophomore in med-school and one of the smartest young men I've ever known, he's also team captain for his school soccer team. He did struggle at the beginning his family had to make some changes in their life style but now he doesn't even think about it, so what I'm saying is, just don't let take over your or her life.
I hope she has a long, healthy and happy life.

Pull Up A Chair said...

Thank you for your thoughtful comment. I too, know people who have lived with Type-1 Diabetes and have managed it well. I hope that Jacqui will be able to do the same. She is very self reliant and intelligent and so I believe she will be ok.

You are most kind.

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